Celiac Disease

Managing celiac disease — an inability to tolerate gluten — doesn't have to mean giving up bread and pasta. Thanks to a new wave of gluten-free foods, your child can stay healthy and eat well too.

Celiac disease is a digestive autoimmune condition where symptoms are triggered by eating the protein gluten, which is found in wheat, rye and barley. When kids or adults with celiac disease eat foods with gluten, the immune system mistakenly treats the gluten as a foreign invader and reacts by attacking the lining of the small intestine. When the small intestine is damaged, it can’t absorb certain nutrients from food. If you suspect your child has celiac disease, it's important to talk to your doctor and get a diagnosis right away, as severe untreated cases can lead to serious issues like delaying puberty and causing osteoporosis and defects in tooth enamel. Fortunately, with the help of a doctor and nutritionist your baby will live a healthy life.

How common is celiac disease

More than two million people in the United States have celiac disease, or about one in 133 people.

Symptoms

Symptoms of the disease can develop at any point in a person’s life — as a baby or an adult — and can vary from person to person.

In babies and toddlers, symptoms can include:

Stomach pain

Diarrhea

Less commonly, constipation and a distended abdomen

In some babies, the only symptom is failure to thrive — meaning they aren't gaining weight or growing as expected.

In addition to the above symptoms, older toddlers also have:

Poor appetite

Lack of weight gain

Irritability

Causes and risk factors

It’s unclear what really causes celiac disease, but doctors know the condition runs in families. Children have an increased risk for developing it if both parents carry the gene for celiac disease or if a parent or sibling has the condition or another autoimmune disease. Celiac disease is also more common in Caucasians, people of European descent, women and those with other genetic disorders including type 1 diabetes, Down syndrome and rheumatoid arthritis.

How it's diagnosed

Babies are most often diagnosed only after they’ve started solids and show symptoms that lead doctors to suspect they’re intolerant to gluten. However, if one family member is diagnosed with the condition, doctors recommend that everyone else in the family be tested, because celiac disease occurs in 5 to 15 percent of children whose parent or sibling has been diagnosed with the condition.

Your doctor will start by giving your child a simple blood test to measure antibodies to gluten and other proteins in the lining of the intestine. However because this blood test isn't always as accurate in young kids, if your child is under 3 years old and you suspect she has celiac disease or you have a family history of it, your doctor may recommend seeing a gastroenterologist or taking a blood test that looks for certain genes that potentially put your child at greater risk for developing the condition.

If these tests come back positive, your pracitioner may order a biopsy of the small intestine to confirm the diagnosis. Your child will be sedated or put to sleep with general anesthesia while your doctor inserts a thin tube through her mouth into the small intestine.

Introducing gluten

Recent research has shown that there doesn't seem to be any difference in when a child first eats gluten and her chances of developing the condition, so experts say it's best to give kids gluten around the time you first feed them solids.

Latest treatments

After your child is diagnosed, treatment is straightforward: Removal of all gluten — most grains, pasta, cereal, and many processed foods — from your little one’s diet. (If you’re still breastfeeding, you’ll have to eat a gluten-free diet too, since you can pass the gluten through your milk.)

While there is no cure for celiac disease, once you get rid of the gluten in your child’s diet, the small intestine will begin to heal within several weeks, and your child may start to feel better in just a few short days. By eating a gluten-free diet, your baby's small intestine can heal completely in anywhere from three to six months. Your doctor will give your baby a blood test to determine if she's deficient in certain vitamins or minerals. If so, your doctor or nutritionist may recommend vitamin and mineral supplements. When there's been a great deal of swelling in the small intestine, doctors may prescribe corticosteroids for a period of time.

Hope for the future

Though it may seem daunting to know that you (and eventually your child) will need to read food labels like a hawk to avoid all traces of gluten, tons of gluten-free products are available, with more and more reaching the market each day. With a few simple swaps, kids with celiac disease can eat just about anything: from pizza to chicken potpies, from muffins to cookies. But under the guidance of your doctor and nutritionist, your baby will be able to live a healthy life.

And the news gets better: Researchers are studying potential drug treatments for celiac disease that detoxify gluten before it enters the small intestine. This type of drug could one day make it possible for people with celiac disease to eat gluten without damaging their bodies. Scientists are also working toward an easier method for diagnosing celiac disease that involves swallowing a capsule containing a tiny video camera that will view and record images of the small intestine (this method of diagnosis could take the place of the more invasive intestinal biopsy). Also promising is the fact that awareness of celiac disease is increasing, which means that doctors are diagnosing the condition in people more quickly these days, which helps to prevent longer-term intestinal damage. For more information about current studies on celiac disease or to see if your child can be a part of new research, visit Clinical Trials.gov, part of the US National Institutes of Health.

Where to find help

There are many valuable resources to help you learn more about celiac disease, connect with other families who have food limitations, and become a savvy reader of food labels. Check out these organizations:

American Celiac Disease Alliance — This advocacy group lobbies federal and state officials, as well as provides resources to families.

Celiac Disease Awareness Campaign — You’ll find the latest info on government-funded research studies as well as publications and studies on this site, which is sponsored by the National Institutes of Health.

From the What to Expect editorial team and Heidi Murkoff, author of What to Expect the First Year. Health information on this site is based on peer-reviewed medical journals and highly respected health organizations and institutions including ACOG (American College of Obstetricians and Gynecologists), CDC (Centers for Disease Control and Prevention) and AAP (American Academy of Pediatrics), as well as the What to Expect books by Heidi Murkoff.